SayWhatClub

Advocacy in the New Political Landscape: A SWC 2017 Convention Workshop

by Chelle Wyatt

Our 2017 SayWhatClub Convention was held last August in Savannah, GA. We lucked out with better than average weather (not as hot as usual).  It rained some but that did not dampen anyone’s spirits! Daily group outings were available which included trolley tours of the city, a haunted pub walking tour, Mrs Wilkes Family Dining Room, the Olde Pink House (so many wonderful southern dishes at both places) and even a trolley/bus to take us to Tybee Island. There’s rarely a dull moment at our conventions.

John Waldo’s Workshop, “Advocacy in a new political landscape”

Because of possible heat and humidity, we held our workshops in the afternoon giving our attendees the cooler parts of the day to explore Savannah; the mornings and evenings and it worked out great. One workshop I’d like to highlight today was one given by John Waldo, an attorney whose practice focuses on hearing loss issues.  He was our keynote speaker in 2012 at the Salt Lake City, UT SWC convention and he gave us a workshop at 2016’s convention in Boise, ID. While preparing the convention in Boise, we were having a hard time getting captions for a play at the Shakespeare Festival we wanted to attend. John was kind enough to write a letter to the Festival and we had captions!

listen tech logo

Listen Technologies sponsored John’s workshop, Advocacy in a New Political Landscape. “Listen Technologies brings power and clarity to the sounds that enrich people’s lives—with solutions that overcome the challenges of noise, distance, clashing conversations, and hearing loss to deliver precise and personalized audio in any setting or environment.” If you take a look at Listen Tech’s website you’ll find their support section is all about education, advocacy and support for those with hearing loss. They have been a great sponsor for the SayWhatClub conventions since 2012 and they are also dedicated to helping hearing loss support groups in the Salt Lake City area. Thank you Listen Tech for sponsoring John’s workshop in Savannah.

John 2
Our workshops are captioned and have a hearing loop.

 

Current Political Environment for hard of hearing

How does the current political environment affect those of us who are hard of hearing and deaf? The ADA (Americans with Disabilities Act) was created 26 years ago, intended to be a charter of rights for people with disabilities. John said, “The underlying idea was to get government agencies and places of public accommodation, which are essentially private businesses, open to the public. The idea was to create a situation where those people brought folks with disabilities into their businesses and made what they were doing accessible to everybody.”

Specific needs were worked out people with mobility issues but all they could do for people with sensory issues was map out generalities, nothing specific. “It requires in places of public accommodation to provide effective communication, unless doing so would be an undue burden.  It requires opportunities to participate that are equal to everybody else ‑‑ unless doing all this would bring about a fundamental alteration of what they’re doing.”

Federal agencies, courts and sometimes legislature decide what our rights are, however that can change as the government changes. During election years things can change a little or a lot, this year there were more dramatic changes. This workshop reflects the changes that affect people with hearing loss.

Successes in advocacy

Last year the Department of Justice adopted regulations on movie captioning which requires all indoor movie theaters to convert to digital format and have captioning devices available by June 2, 2018. If they don’t have devices available, contact someone about it or let John know. The new regulations will not require open captioned movies under any circumstance which is a shame. John and others have argued with the Department of Justice on how much better open captioned movies are but they don’t understand that yet.

The second issue with the captioning/digital regulation is they made it only applicable to movie theaters; not museums, amusement parks or anything that shows movies that isn’t the main part of their business. John is afraid that museums and such will not caption their movies now, another shame. In the end, “we are happy with what we got but we don’t love it.”

Future Possibilities in Advocacy

What didn’t happen this past year? When the ADA was created in 1990, the internet didn’t exist. The Obama administration thought the internet should included in accommodations while not a public space in the traditional sense, it serves the public at large so captioning should be available on website. They proposed captioning on state and local government websites, going so far as to have people respond to 123 questions about captioning and blind accommodations.  Those propositions were not picked up by the current administration and put into a new “inactive” category. This is both good and bad, we won’t see anything happening in the next four or so years but then again, they aren’t taking it apart either. Unfortunately, texting 911 fell into this category also, which would have brought us into the 21st century.  

Taking it to the courts

Private lawsuits might amount to better laws in the future. Three years ago a case was filed in Philadelphia by a Deaf-Blind man who wanted a tactile interpreter for a movie. They theater so no, the ADA doesn’t require that of us so we aren’t going to do that. The Department of Justice said they were wrong and had to provide effective communication unless it causes an undue burden. That case went up on appeal and is still pending. John checks on this case a couple of times a week because it has potential to help those of us who are Deaf and Hard of Hearing. *** It looks like this case has been settled since the SWC convention, here’s an article: http://www.foxnews.com/us/2017/10/07/deaf-blind-patrons-must-be-able-to-go-to-movies-too-court-says.html

To further demonstrate how things are flipping around, there’s another lawsuit against Coca-Cola saying their vending machines are not blind accessible. The lower court and court of appeals tossed it out saying vending machines are not a public accommodation. The Department of Justice at first said yes they are but with the new administration they have reversed positions and said no they are not.  

On ADA enforcement, nothing has changed so far. The enforces with the Civil Right and Disability Divisions are still hard at work with accessibility, some good settlements are coming out. There is no “benign neglect”, no harmful changes yet.

There hasn’t been a whole lot of activity in the courts so far this year. They’ve had good luck with websites to stores that are places of public accommodation such as a grocery store. Where business is strictly internet related such as Netflix, some courts say yes and some say no. There was a case against Domino’s Pizza with a blind man saying their website did not accommodate vision loss. Domino’s said they weren’t required by the federal government to comply; no regulation, no liability and a judge agreed with Domino’s and it’s up in the appeals court now. (John calls these ‘zombie’ arguments because they keep getting shot down but keep coming back.) However in another similar case a judge ruled that yes they had to provide accommodations.

Another ‘zombie’ case has to do with inventory, the ADA says you must be accessible but you don’t have to change your inventory. Cinemark used this strategy saying movies were their inventory and asking for accommodations meant changing their inventory so asking for accommodations meant changing their inventory.  Cinemark lost the case. In another inventory case, a man with mobility issues needed a temporary hand control added to the steering wheel to be able to test drive a car. The car company said no, that’s changing our inventory. It went to court and in July the court ruled that’s not what changing inventory is about, the ADA is saying you don’t have to stop selling cars because it’s not accessible to everyone. What you need to do is temporarily add the modification to sell the car.

“Well, that sort of blows to Smithereens this idea about inventory, because it seemed to me that installing hand controls in a car is exactly the same sort of thing as providing captions for a movie or tactile interpreters for a movie. You are not changing inventory overall; you are just asking them to make a temporary modification on this particular occasion and this particular item. So that was an absolutely wonderful case. And if we have time to get to it, I will talk to you about some of the things that we anticipate we can do with that case,” John told those of us at the convention.

John Waldo 1

Impact of Nuisance Lawsuits on Hearing Loss Advocacy

Congress also has the potential to cause us problems. Prior to the con, many of us had heard about the ADA Notification act which revolves around nuisance ADA lawsuits, hundreds of lawsuits mostly on mobility issues. “I don’t mean to pick on mobility people here. The problem is they have the reverse of what we have with effective communication. There are no regulations telling you exactly what to do to create effective communication, but with mobility access there are tons and tons of extraordinarily specific regulations. The flip side of that is that even minor deviations from those regulations can arguably be a violation and bring about a lawsuit. These are the sort of nuisance lawsuits. Apparently there are people who will go out and look through parking lots and find those disability placards, the ones that say disability parking only, and they will say, they are in violation because the sign is the wrong height. Or the type isn’t exactly the right size. Or they don’t have exactly the correct amount of the fine if you park in this space.

I think most of us would admit that these are things that ought to be fix able quite easily. So the ADA notification act requires before filing a lawsuit for the ADA violation, you have to give people notice what of the problem is and an opportunity to fix it.”

The business community’s side of it is there are all these lawsuits that could be fixed easily if you just tell us about it. The other side of it is good to be able to enforce the laws with private action. John feels it doesn’t really affect our ‘effective communication’ and businesses should be given the opportunity to fix issues before going to court.

Another bill that sailed through the House of Representatives was one on class action lawsuits. Businesses don’t like that thousands of people can pool their resources and sue companies such as banks and cable that sneak a lot of added little charges into the bill. So the House of Reps came up with a ‘conflict of interest’ rule to get rid of these kinds of lawsuits. To keep lawyers from making their money by having relatives file lawsuits, the new bill requires class action lawsuits to disclose relationships with plaintiffs or whether or no lawyer represented them before. This makes sense for money-making lawsuits but none for disability rights violations, said John. This would affect advocacy organizations who are suing for accessibility, not money. At the time of the con, this bill was stalled out at the Senate.

The next one is the anti-SLAPP (Strategic Lawsuit Against Public Participation measure introduced in 2015. To explain this John used this example: “The classic SLAPP lawsuit was filed by the developer against, say, the Sierra Club. The Sierra Club would come in and say, no, your shopping center is going to poison the stream that the community relies on with water. The developer would turn around and say we will sue you for defamation and X amount of economic advantage. I won’t win because you are exercising your first amendment rights, but you will have to spend money and time and hire attorneys, so that will be a lesson to you. It will cost you a lot of money to be able to get out there and participate in this public process.”

Federal Anit-SLAPP Lawsuits

This affects us because asking for captions would fall into Anti-SLAPP. This would affect ALDA (Association of Late-Deafened Adults) which is a small group with no money, who has successfully advocated for captions in the past. This law could require them to pay the other side’s attorney fees up front. As of now, these fees can be avoided because the action is filed under the ADA and state laws don’t apply. However if there’s a federal Anti-SLAPP statute that would apply to the ADA and subject us to potential damages. It could tie up cases for years making it expensive and then lawyers who work for free doing this sort of thing, might have to charge to pursue captioning. Luckily the federal Anti-SLAPP measure expired in 2016 and has not be reintroduced.

John talked about another lawsuit he briefed us at the  Boise convention in 2016 against the Fabulous Fox Theater in Saint Louis. The Fox theater claims to be one of largest theaters but doesn’t think they have to provide captioning so they are suing them. The Fox is now exploring something other than captions beside the stage because they don’t want to block out seats. Instead they are looking into providing captioning via handheld devices…and if there’s a lot of action we “become a bobble head” looking down to read and trying to watch the stage. John and his client agree this is not adequate. Not only that but the screen is bright and attracts negative attention. The Fox is also fighting captioning more than one show per performance, they are saying once is enough and “we are saying that isn’t enough.” They are claiming undue burden. The case has yet to be decided but John is confident that it will come out in their favor in the end.

He talked about another experience he and his wife had in New York on Broadway with handheld devices which didn’t scroll in time with the dialog. “Broadway can learn from live theater. We can come up with some better way to do this, some better way of creating captions for every seat, for every show, something we don’t have to hold in our hand. So we put together what I call an invitation, a letter, to some of the bigger theater owners that said, we would really like to sit down with you and talk about a better way of doing this and we sent that letter out on the 10th of November. And then I kid you not, one of my friends in New York, that I was working with on this, gets an email from the Schubert group saying, guess what? We figured it out. We realize that there has to be a better way of doing things with live theater. We would love to sit down and work with you on how to make this happen.”

“What we really want is to live a spontaneous life. We want to be able to plan at the last minute, do things spontaneously, just like everyone else.” – Richard Pimental

John quoted the SWC convention keynote speaker in Boise, Richard Pimental, “What we really want is the ability to live a spontaneous life. We want to be able to plan at the last-minute, do things spontaneously, just like everyone else.”  Broadway is willing to work with captioning, we can try different ideas to see if we can bring about that spontaneity for theater.

That National Association of the Deaf (NAD) and ALDA are working to get sporting venues captioned. While attending the game, it isn’t just about the game which you get on TV, there are announcements, presentations and interviews on the field. It’s nice to have those captioned too.

He’s also working on theaters maintaining their captioning devices so we don’t have to put up with devices that are charged or captioning properly.

In the future, if the Department of Justice is not going to be our warrior friend then we will all have to come together to make things happen. “One final thought I would like to leave you with is a cool thing about the Americans with Disabilities Act, it is a federal law, but it specifically says that it does not control over state or local levels that provide greater protection for people with disabilities. Some state laws do. Some local laws do.

So if you don’t like the law as it’s written, the ADA as it’s written, try going to your city council and see if they will pass an ordinance in your city that will actually make life better. I mean, in Portland, Oregon, sometime within the past year, the City Council passed a law that saidan ordinance that said all televisions in public places have to have their captions on. So this can be done.”

Auditory Fatigue/Listener Fatigue

by Chelle Wyatt

I belong to three hearing loss organizations and they each have something I value (SayWhatClub is closest to my heart). I love my local HLAA chapter for its face to face meetings. A few weeks ago they had Susan Naidu, an audiologist at the University of Utah talk about auditory fatigue or listener fatigue and cognitive energy fatigue. She works with patients in the clinic, trains graduate students to become audiologists and her favorite thing to do is aural rehabilitation therapy. She was happy to talk about auditory fatigue because “it’s a very real phenomenon, it’s a real condition but it’s not discussed much and not researched enough.” It isn’t clinically recognized but many professionals are familiar with it.

Auditory fatigue doesn’t mean people are dumb because they can’t listen, it’s the “energy it takes to fulfill the complexity of listening because listening requires more to go on in your brain in order to comprehend what you’re listening to.” Ian Noon wrote about this in his piece on the Limping Chicken out of the United Kingdom only he called it concentration fatigue. Noon says: “I went to a great conference today. It was riveting and I was hooked on pretty much every word. And then I got home and collapsed on the sofa. I’m not just tired, I’m shattered. I’ve had to turn my ears off to rest in silence and my eyes are burning. I’ve also had about 3 cups of tea just to write this paragraph.”

a picture of a brain in a frying pan with the caption my brain is fried depicts how auditory fatigue feels

Susan introduced us to Kathleen Fuller’s work on hearing loss and cognitive energy. Fuller asks, “How can audiologists better understand and find ways to counteract the underlying factors that cause listeners to decide to quit participating in activities when it takes too much effort to listen? How can audiologists help listeners to strategically deploy their available cognitive capacity in situations where it is hard to listen? How can audiologists prevent listeners from avoiding and withdrawing from social participation because it is too hard to listen?

It’s said we hear with our ears and listen with our brain. Now we add when and how much effort we expend during listening in everyday life depends on our motivation to achieve goals and attain rewards of personal and/or social value.”

Listening takes an effort. It’s not only being able to hear but being able to pull all the components together to communicate properly. It’s being able to understand language, generating an appropriate response and being able to keep it going back and forth to make a conversation. Usually people aren’t just listening either, they are multitasking; washing the dishes, walking, watching TV, etc.

For those with hearing loss it takes even more effort. Not only are they taking in the above but they are trying to decode the message. Add in being visually aware to compensate such as speechreading and body language. The mind races to fill in blank spots in words and conversations which involves guess work. The mental process is “I’m not hearing well enough. I have to do something and physically push the brain to listen better.” After an hour (or less) these people are really tired and experience discomfort, pain and numbness.

What makes listening even more difficult? Noise, it’s the number one complaint for those coming into Susan’s clinic. Trying to filter and ignore noise makes listening harder for hearing people and difficult for the hard of hearing. Even with modern technology in hearing aids such as directional microphones and noise reduction programs noise remains a problem. Restaurants are an example, bars and traffic. (Hearing in cars has never been easy!)

What other things are hard with this much cognitive energy being spent? Remembering things get harder because with so much going on in the mind already, it’s hard to find a place to stash the information. People may have a hard time remembering names because there’s more focus to understand what’s being said. While in a meeting they can be so intent on understanding the words as they are being said that half the meeting information is forgotten.

Because of the intense concentration, hard of hearing employees end up taking more days off. The mental stress affects their bodies causing illness among some. Or to balance out, they stay home evenings and weekends to recuperate, avoiding social activity. For those who don’t work, many tend to withdraw because it’s too much work going to that party, the play or lecture. It’s easier to stay home and watch TV with captions. It’s not worth it in the end, the struggle is too much.

charlie brown lying awake in bed with the caption , "I'm already tired tomorrow.

Mohan Matthen is studying why some hard of hearing people are more successful at socializing than others. He thinks it might be a pleasure factor. When audiologists diagnose hearing loss and fit people with hearing aids they tend to talk about adverse conditions. What if they talked about positive things instead? If a person can exhibit more pleasure in the role of listening they might be more relaxed and less stressed out. Once it becomes pleasurable their listening effort seems to be reduced. No matter how hard it seems, seek listening enjoyment. Make it fun and shoot for positive because the reward will be “I will understand.”

So what helps combat auditory fatigue?

Advocating helps a great deal. What do you need to make this meeting better? CART (live captioning)? Sitting closer to the presenter? Assistive listening devices? One speaker at a time? Don’t talk while multitasking? There’s a lot to be said for planning ahead as well. Think about the environment, talk to the event coordinators, find out if the venue has assistive listening devices such as the CaptiView at theaters or live captioned performances. If you’re going to a lecture/workshop/convention, talk to those in charge well in advance to see what might be set.

Some people report learning speech reading has helped lighten their fatigue. Visiting with people a few at time instead of large groups. Limit interruptions, have a quiet room to talk to family members at large gatherings. Ask for background noises (music or TV) to be turned down or off. Go outside to eat because break rooms usually have lousy acoustics. Take hearing breaks and read instead of watching TV. Arrange for hand signals when conversation needs to be slowed down or when wanting someone to talk louder. Find out what works for you and advocate for yourself. It’s okay to experiment with it all.

More links on auditory fatigue

Studies done on prolonged exposure to audio stimulus (for those who want to go deeper). This phenomenon occurs after an extended period of time listening to speech and happens to hearing people as well. Hearing people have more problems than expected which might be related to an auditory processing disorder. Susan said those with hearing loss all have auditory processing disorders.

Richard Gurgel is studying the relationship of hearing loss and dementia. Are individuals with diagnosed mild dementia experiencing decline in auditory processing? Older individuals who have hearing loss but didn’t have hearing aids showed improvements once aided, not just in quality of life but in skills. People were thinking they had dementia when they didn’t.

Starkey on listening fatigue.

Amplification study. Amplification has limited improvement for those with a steep slope high frequency hearing loss.

Susan recommends the LACE (Listening And Communication Enhancement) Program, it improves listening skills.

More publications by Mohan Matthen on hearing loss and displeasure.

Black Friday, Cyber Monday and now, Giving Tuesday by Pearl Feder

As we head into November, many people begin to prepare for the holiday season.  Every year I attempt to take my mind off the burdens and stress of the holiday season through “giving.”    Thank goodness for all things Social Media. I organize gathering hearing aid and implant batteries for the needy.  The internet has afforded me the opportunity to reach out to those in need through online support groups for the hearing impaired/deaf and Facebook chats focused on hearing loss and deafness.  Through my work online, as well as with Audiologists in NYC, I have received a wonderful response to my request for batteries.  This has allowed me to accept more individuals in need to apply for the batteries. I plan to mail out all the batteries on November 27th.   What does all of this have to do with GivingTuesday?

What can I do to make the world a better place?

A wonderful idea came to be with the thought of Americans giving thanks on Thanksgiving.  Instead of people waking up at an ungodly hour to wait online for sales on Black Friday, or sitting  on the couch, glued to our laptops, waiting for the deals to appear on Cyber Monday, a day of “giving” was born.  Giving Tuesday, November 27th, 2012,  is not just about donating money.  It’s about teaching your children how to give without taking something in return. GivingTuesday offers us a time to pause and look at the world around us and ask ourselves, “What do I WANT TO DO, to make this a better place for someone else?”

GivingTuesday is time to work with your favorite cause,  a time to help your children understand causes, and to talk about how they can be part of it.  GivingTuesday is a collection of not for profit agencies from around the world.  Its mission statement is as follows:  ” #GivingTuesday™ is a campaign to create a national day of giving at the start of the annual holiday season. It celebrates and encourages charitable activities that support nonprofit organizations.”  http://givingtuesday.org/

As an Ambassador to GivingTuesday, it was my job to spread the word and have people recognize within themselves, the notion to give back.  I also decided, after seeing the list of dynamite partners that joined up to help create GivingTuesday, that what was missing for me personally, were organizations that would bring attention to hearing loss and deafness.  Every partner in GivingTuesday is absolutely worth looking at.  Thats why I asked Collaborative Communication Access via Captioning (aka: CCAC)  to become a partner of GivingTuesday.  CCAC believes in “INCLUSION and ACCESSIBILITY”   for the hearing impaired and deaf/Deaf population, as well as captioning as a tool for Literacy.    We hope one day to put CCAC out of business and when that day comes, it will mean we succeeded in obtaining universal captioning for all.

For more information about CCAC, check out their partnership with GivingTuesdayas well a CCAC’s website. As a hearing impaired professional woman, universal captioning means I am included and I am able to be part of it all.  Being “able” rather than “disabled” is very important to the 42 million Americans with hearing loss and myself.  Help CCAC on November 27th by writing your Congressman/woman or get involved directly with CCAC.  Find out how by checking out their website.  And don’t forget, on November 27th, give of yourself and feel the difference.

“The human contribution is the essential ingredient. It is only in the giving of oneself to others that we truly live.”     –Ethyl Percy Andrus